gwen

sorry to hear about mayo, i had the same response earlier this year. all i heard from family and friends was" who gets rejected from mayo?" I needed the help and what validation i felt was shot. My cardiologist who referred me, said he wouldn't even return her call which is a professional courtesy. she wasn't impressed. I have an ep appt dec 8 and i can only hope i;m having a spell so he can get the full experience. Keep searching!

I have developed over the summer some green bruises all over my lower legs. the original ones have not gone away and I seem to be getting new ones. They are never purple and are about the size of a half-dollar. I do run into things but not just on my lower legs. I've also noticed lately that If I cross my ankles in the recliner or my ankle above the knee, that leg will soon go to sleep.Does anybody else have this. I do not take aspirin.Thanks!gracie78

my allergy is yeast and malt. malt is in everything. i eat very little bread but every 4 or 7 days will allow a little but i pay for the treat. try to schedule around not having abusy brain day the next day.:-)

Hi all. I have been struggling with extreme sleepiness tiredness no umph! I have been taking all the meds but while the bp is better I can still feel it drop, just not low to start our with.. My GP who is wonderful and has worked with me on this for three years. She is also a cardiologist. Ive been with her for ten years so she has seen me healthy and not. She thought perhaps iwas experinceing depression since all the lbood work was fine and bp was up The anti depressnats etc she was prescribing weren't doing anything so she suggested I see a shrink I saw several years ago. Also extreme braing fog. extreme. I see the dr. p and she is great as ever and was not familiar with pots but was interested in learning. Her husband is a well known cardiologist and surgeon here. She mentioned at the next visit he suggested I see an electophisiologist, who he knew and is also well known. So I mentioned this to my GP who said she thought that all her tests were conclusive and he would just be re -doing costly tests. We have tried all sorts of drug combos and right now the bp is better although no long time standing etc. I thought that was fair enough. Why go thru all sorts of tests that would just bring us back to POTS. I went see dr. p and she has put me on adderall and they have to keep upping the amounts. Still tired and sleepy. I told my husband I thought adderal was speed and so far it hasn't done much. At evey visit she would gently suggest the other dr. but I thought my GP made alot of sense. So last week I decided whatever, I can't go on like this I'm going to see the electrop. what did I have to lose. I'm at a deadend. well Gp really didn't understand why the dr,p was pushing the elec. so much and what else she thought he would find. Then she mentioned a shrink at a different hosp who could do a PET scan and see what parts of the brain were firing or not, maybe that was an idea to consider. Plus she is going to conference with dr. p on what ever. So I'm back to my original problem of just wanting to find an answer that works and I will deal with it. so I'm asking not for medical advice, just your thoughts since I'm sure you have gone thru some of this yourselves. I trust both drs. I just don't know what to do. Obviously the final decison is mine but your input is very welcomed. Thanks. Just tired of being tired and dumb.:-)

I get what the dr calls "half a shot". she may be pulling my leg but I didn't get the flu or sick from the shot. Maybe other dr's do this? She especially wanted me to have some coverage because of what she was afraid the flu would do to me.

I am in MO rural area and have two kids at Mizzou! They are also aggies! Imay have to check this out!!

I think Kathy described it perfectly for me. I haven't said it just like that, but a tuning fork would be perfect. I had it all last night and today I can barely focus my eyesight. Thank you Kathy!

Do you still have your gallbladder?

Try a dr Faoud at st louis univ hosp. he specializes. He teaches but also sees pts.

I was diagnosed with rosacea about 5 years ago and minocycline and a cortisone topical cream was rx. Some foods, stress, sun hormones, who knows whatever made it flare.Then I found out I had a systemic yeast infection which I will have for the rest of my life the way I understand it, And so Off the antibiotic. Well When I went on the strict diet and no yeast products low and behold no roseacea. I commented to Derm and he said it was a known factor of many. I can't eat citric fruit or juice or it will also cause it :-(. I noticed no difference with midodrine when I went on it. But I started drinking a mountain dew int the morning to wake up lately ( I Know, no-no) and also went back on minocycline for the prior discussed good benefits for NMH. Roseacea came back but I'm pretty sure its the soda!! The most effective tool is the cortico steroid cream prescibed by dr. I use it twice a day. I also helps the itching. If I put it on my face looks normal. There is a green makeup cover stick put out by almay for undereyes but if used on redness and then foundation over it it will cover a bad out break pretty well.

Hi! sorry to hear about the side affects from withdrawal. I'm on Midodrine and wellbutrin,celexa and klonopin. I was on the wellbutrin and klonpin before dx and pres for midodrine which i can not go with out. I need all of them frankly. I was encouraged that they are on the dinet site. Of course everyone is different. I too did not respond well to florinef. We are all so different!Good luck on Dr. visit.

Hi! sorry tohear about the allergies. they are very bad in mo. too. I would ask dr's office and or pharmacist before trying anthing off the shelf because of possible drug interactions. I was like you a couple a weeks ago , pretty despperate. I take zantac and no flonase twice a day. still have a little problem but much better. Be real careful. don't wan't you to upset the bp since allergy pills do dehydrate.:-)

I had been on I think just about everything for depression. Wellbutrinxl has been a God send . I'm on 600mg. I 've had no side effects which is amazing compared to most of the others.

I live in a small area so I usually run into people I know.. and they want to chat well I just can't stand that long. You know you have only so much time till the bp drops. and then I do. If I knew who the baggers were after I complained to management "constructively, because your worried about the stores reputation" I would get one of the chairs that worked, and stalk those suckers down. Mow. Ooops! Take that cane and "accidently" knock over the fruit displays. You could have a lot of fun with this.Every shopping trip could be an adventure. For the morons who ask what you have wrong my favorite is "a brain tumor" or Syphillis.. That shuts them up. Moves them along. The people at stores used to ignore my gram when she was shopping in a chair with me behind. So I would load the conveyor belt give her the check and wait behind the bag boy. forces them to look you in the face if when you hand over the check, money or cards you hold onto it tight as they take it from your hand so they almost have to tug of war. Or you can always bring quarters and pay realllll slow. Still have that same bag boy? Note what ever is on the furthest wall of the store and say in the check out lane"Oh I forgot to get ________." Bagboy has to walk back and get it and then say, Oh you know I already have that. Never mind" and smile big. (hopefully not a lot of people behind you). The parking lot is just not a good situation. I really don't know what to do with that. You can always put vasoline on the door handle. It comes in lip tubes so you don't need a jar. There is also something called car chalk. its kind of like shoe polish only it doesn't damage the car. You find it in the car dept of stores like walmart. it fits in your purse. you can leave a little message. Saran wrapping the vehicle just takes too much energy. yes I have teenagers. I'd hate to think what would happen to the stores insurance if you all have an accident because of their carts causing you injury. might want to remind management that.:-)

I'm so proud of you!! Soounds like you have a good Dr. to stay on your husbands case. Can't be too careful. Congrats!:-)

thank you for sharing the study! I am greatly interested in reading these, but don't know where to find them. do you google or is there some other site that lists these as they seem to come from a variety of journals? thanks again!:-)

With a building as beautiful as that, I can see how you persevere! My heart is with you.;-)

sorry to hear your feeling so bad. I have been on adderall for about 3 months. Istarted on 15 mg and I just didn't have the mental accuity I thought I should have. 20 mg gave me the mental but made me clench my jaw and I had some leg twitching so I went back to 15mg last week and I can say my blood pressure is still better. My dr was very pleased with it. I still have the drop when I stand up but over all it is up 10 to 15 pts. She mentioned I could still go back on straterra which was fab for mental acuity but I just haven't made up my mind if I want to go on yet another pill. I jiggle when I walk now.:-)

Hi! Felt great Thurs and Fri and Sat morn. Overdid it I guess, made a huge meal for sat night. I don't know but have felt terrible since. Midodrine has a warning to not lie down for 4-5 hrs after taking it. It doesn't bother me, NMH, but if BP is high it is a bad idea. I try the recliner although sometimes that just doesn't work. Passing out kinda takes the choice out of it:-). get some little things and put around the houseafter the wee ones are in bed. next day tell them you were cleaning and apparently they didn't do a very good job on Sunday. Or "Mrs Bunny" dropped some more stuff by. They will be more suprised and less stress. Try a carrot cake one night for a vegatable at dinner:-). Or jelly beans on thier plates. Both families!?! I barely did it with jus the 4 of us and then sun my mother-in-laws. The energy thing I wish I had the answer for!! I'm sorry it didn't turn out as expected but spread it out this week (it is holy week) a little each day and I know the kids won't object!! It may start a new tradition at your house!! You have a blessed husband. My husband told me I have a big butt. I've lost 27 lbs. I 'm now 2 sizes down on pants . 126 and 5'8". I do not have a big anything anymore. Back to the padded bras!!:-)my thoughts are with you. :-)

I am so sorry for your troubles. They do seem to come in waves. I do think you are spreading yourself too thin!! Maybe this weekend you could mention to your friend and kids that you coould use a 15 min. pickup in whatever room they pick. Then order pizza and use paper plates.. :-) you coulduse the friends shoulder this weekend and trade stories. I wish I could help. Perhaps the friend could talk to your husband?

Hi! I have been interested in the deep brain stimulus since it was in testing. My grandmother had severe familial tremor ( like the actress Kate Hepburn). Not parkinson but she voluntered to be testee (as well as botox inj), unfortunately because of her age 90's, she was disappointed. I have followed it ever sense. I Have two friends who have had the proceedure for parks'. One did very well, except he just didn't get it early enough! 5 years would have made such a difference. He passed from a different problem. The second friend got it about 18 mo ago. it all looked soo good, but she developed an infection around the device in chest and the drs took it out when it spread to pericardium. so she is hoping in a few months to have another inserted. She is so upbeat for all she goes thru. It was working well all though not at full strength when they had to remove it. They say they will have to insert device in right chest this time?. I have oftenwondered about its application to ANS and nch/pots. There seems to be such a range of possible causes it may only be for some people. The cost involved will make most ins co balk if med of any kind may help. They don't really take us seriously now. The first friend paid out of pocket and second fought for several years with severe symptoms before she "got lucky". I hope it helps someone out there!!:-)

Yesterday I was sick all day. But I woke up real early this morning and by mid morning I was nauseous and exhausted. My bp machine just keeps reading error. I was supposed to see Dr. today but just couldn't drive the 60 miles. Is anyone else having problems with this?

Hope this is for a very short hosp stay and then home again soon. Prayers and thoughts your way:-)

you hit the lottery!!Great!!

I've decided to just let my unwallpapered bath stay that way awhile! Please rest and think good thoughts. I'll be praying for you.